How to help patients talk to a child about their terminal illness

As a health and social care professional, you have an important role in helping a parent or guardian speak to their child about their illness.

You can provide support at a time when they may not know what to do − and may get conflicting information from family or friends. This page has guidance on how you can support a parent or guardian to have this conversation.

On this page, we use the words ‘parent’ and ‘guardian’ to keep it short. But we still mean all parents, guardians and other adults who help to care for the child.

This information is for health and social care professionals. You can use our My Learning form to reflect on how this page has helped with your continuing professional development. Download the form.

You can begin by saying that you understand that this is going to be a difficult thing for them to do. Make sure they know that you, and other people in their care team, are there to support them.

Some parents may feel that they’re protecting a child by not telling them about the illness, or feel unsure about how to do it. Ask them if they’d like support from a professional to start or support the conversation.

They may also be unsure when is the right time to talk to their child. You can reassure them that there is no ‘right time’. If the parent feels able to have the conversation, encourage them to find a time and place where they will not be interrupted or rushed.

Before you've finished talking with them, let them know when they can speak with you again. What you’ve discussed might be overwhelming, and the parent may need time to think. It can help to note down and give them a copy of what you’ve talked about, including useful contacts and organisations.

Children and young people often want to be told when someone close to them is seriously ill. Not knowing what’s happening can be confusing and may lead to more anxiety. Preparing children for the death of someone close to them may help their long-term wellbeing.

If things are not explained to them, children may search for information themselves. For example, they might look online, go on social media, or they might overhear conversations.

You can explain to a parent that if they feel able to tell their child what’s happening, they can control the information they give them. This can help them reflect their situation accurately. Reassure parents that there are people who can support them, like counsellors, social workers and patient and family support teams.

Encourage parents to think in advance about how they might answer difficult questions. Reassure them that it’s OK to say that they do not know the answer to something – they can keep to what they know. They can come back to anything they’re not sure about when they know more.

Remind them that there are professionals who can support them with answering difficult questions.

It can be helpful for parents to avoid euphemisms or other terms that could be confusing for a child. For example, encourage parents to use the real words for things like dying, death or cancer, instead of saying things like ‘gone to sleep’. You could suggest they tell other people, like friends or family, to use clear and simple language with the child too.

Encourage the parent to explain that their illness is different to illnesses their child may have had, such as a cold. It’s important to be clear that the parent’s illness cannot be cured. They may have religious beliefs that can help them to explain their illness or death. But it’s still important that the child understands that death is permanent.

A parent may need to explain or say things more than once so that their child understands. And they may need to repeat or have new conversations as their illness progresses.

It may be easier to give younger children information in small chunks at a time.

Having to tell their child something as difficult as this can feel overwhelming for a parent. And naturally, they may be worried that they’ll get upset or emotional in front of their child.

Reassure them that it’s OK to show their emotions – like, becoming tearful. It can be a natural and appropriate way to respond. You can encourage them to share their thoughts and feelings with their child. It may also help the child share how they’re feeling.

Every family is different, and that’s OK. As a professional, try to be understanding. People will approach the conversation in their own way.

It’s important that parents and guardians understand that each child is unique and will react differently to the news. Just because they’re a certain age, does not mean that a child will react in a certain way.

For example, some children may not seem emotional at first, while other children may get angry. Children may also switch between emotions quickly. Try to reassure parents that these are all natural reactions.

If they’re worried about their child’s behaviour then it’s best that they speak to a professional, like the child’s GP or a counsellor.

As a professional, you provide patients with clear and accurate information about their illness, including their prognosis. In the same way, it’s important that parents and guardians try to be honest with their child about the reality of their illness.

As hard as it is, it can help if they resist giving their child false hope that they might get better. Even though they may feel like they want to protect them.

You can explain to them that it can help if they can keep up with family routines and activities, if they're able to. This includes encouraging children to keep going to school as well as keeping up with social activities. Places like schools, clubs, and social groups can also offer extra support.

You could ask them if they have family and friends who can help to support them. Try to encourage them to accept offers of support like this. They may be able to help with things like lifts, childcare or tasks around the home.

Encourage parents to let other relevant professionals know about their situation. This includes speaking to staff at a child’s nursery, school or college about how they can support the child. You can also recommend charities and other organisations that can support the family like Child Bereavement UK or Carers Trust. They may also want to look for support through their faith community or other local networks.

Signpost parents and guardians to professional support. This might be patient and family support teams in your area, other professionals in their care team, or specialist organisations.

It may feel difficult to talk to a parent about planning ahead for when their illness gets worse or after they’ve died. But it can help their wellbeing to know that their wishes for their family, including their children, are known.

It’s natural that they may not want to think about planning ahead. It might help to explain that this may mean they become too unwell and miss the opportunity to do it.

As a professional, you can support the parent to start planning for their own future care. You can also share information about practical things, like Power of Attorney, making a Will and sorting out digital accounts.